Dylan-James' Story
DYLAN-JAMES' STORY-
WILMS TUMOUR
Alison and Warren lost their beloved son Dylan-James to cancer, when he was aged just three.
Alison had been diagnosed with ovarian cancer in 2013, when she was 35. At the time, she had recently got engaged, was planning her wedding to marry her childhood sweetheart Warren and had her dream job as a Head teacher.
“Warren and I met when we were 16. We were at sixth form college, and he held the door open; our eyes met and the rest is history. When we were 35 and buying a house, it seemed the right time to finally get married and start a family.
“I went to check I was in the best possible health and was told I had ovarian cancer. I had surgery, in which they took away one ovary; one fallopian tube and said it would be difficult for me to have children.
“The thought of that not happening just seemed incredibly cruel - that’s why it was such a delight when I conceived a year later.
“I relished every minute of the pregnancy and did not take anything for granted.”
Dylan-James was born in 2014, 2 months premature.
“It was the happiest I have ever been, and we knew how precious he was, even more so being a premature baby. He was a real delight and brought so much joy to us as a whole family. He made everyone laugh, smile and wherever he went he left an impression, particularly with his beautiful eyes. He could light up a room and he loved the character Cat Boy from PJ Masks; he used to love dressing up as him too."
“In 2017, just before his 3rd birthday Dylan-James had a fever, and his daddy said his tummy was really hard so we took him to A&E. We thought it might be appendicitis, but the A&E doctors said they were really concerned, and he would need to go for a scan.”
The scan showed a mass on his kidney called Wilms tumour, a childhood cancer.
“That moment everything just stopped for us. Our world turned upside down but, at that point, the doctors were positive and we were told: “this is a ‘curable’ cancer, this isn’t a terminal diagnosis”.
Dylan-James started a 12-month, high-dose chemotherapy and radiotherapy treatment plan as well as major surgery to remove his kidney and the tumour.
“We were absolutely devastated, it was really difficult but he was so brave and carried on playing and smiling. The treatment meant he could not go to nursery or meet his friends, but Dylan-James carried on being amazing all through those months.
"We never ever thought we would lose Dylan-James. Everything was going well and all his scans were coming back clear. We were two months from the end of the treatment when one day he announced “I’ve got a ghost in my tummy”
A scan showed that the tumour had not only come back, but it had also spread to his lungs.
“I said to the doctors 'Just do whatever it takes. I can’t lose him' but they said 'There’s nothing else we can do. He has got two months.'
“My heart was breaking in places I didn’t know was possible. I had to look at him and just smile because I didn’t want to tell him. It was the hardest thing I have ever had to do.”
Dylan-James passed away on 22 June 2018, just two weeks after his terminal diagnosis, and it was only weeks before his 4th birthday.
“I was cuddling him and he just stopped breathing. There’s nothing worse than watching your child’s heart stop beating and yours carries on.”
At the funeral, his Cat Boy superhero costume was laid over his coffin and Alison’s school community organised for a Mr Whippy van to give out ice creams to guests, as Dylan-James loved ice-cream.
“The day I buried Dylan-James, they buried me.”
Alison and her family are supporting Stand Up To Cancer in Dylan-James’ memory to help raise awareness of childhood cancer and the importance of developing new treatments.
“We were absolutely devastated, it was really difficult but he was so brave and carried on playing and smiling. The treatment meant he could not go to nursery or meet his friends, but Dylan-James carried on being amazing all through those months."
-Dylan-James' mum
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